The National Disability Insurance Scheme needs to be amended to recognise the needs of carers, a new report has recommended.
Ageing parent carers are suffering from high degrees of stress and anxiety due to the uncertainty about the future care of their son or daughter after they die, Anglicare’s Caring into Old Age report found.
The report, published on Monday, urges the government to amend the NDIS legislation to include a separate assessments for carers to determine the level of support carers need as they get older.
Based on a study of 159 carers across five years, the report found most of those aged over 60 had been providing care for 30 years or more, but only 10 per cent had started to make transition arrangements for the care of their son or daughter.
“We know a lot of carers who have said, ‘I’m too scared to die because I don’t know what’s going to happen to my son or daughter’,” said Sue King, Anglicare’s director of research and advocacy
“It’s been great having this massive focus on people with a disability,” Ms King said, but added that the effectiveness of the NDIS was dependent upon seeing “disability as being a partnership between the person with the disability and the carer”.
Senator Mitch Fifield, Assistant Minister for Social Services, said the government would consider the report’s recommendations along with feedback from the NDIS trial sites.
“The purpose of the NDIS trial sites is to learn lessons and make any necessary changes prior to full national rollout,” he said, but added that carers’ needs and goals were already included in the planning process with the NDIS participant.
The report also called upon the government to address the shortfall in assisted accommodation for the disabled, which it identified as a key factor preventing aged carers from putting transitional care arrangements in place.
Evelyn Scott, 69, who is the primary carer of her daughter Kylie, 34, said she knows of many parents in her situation who are struggling to find accommodation for their disabled child in Sydney.
“Those of us who are ageing and getting more and more tired and worn out are still looking for the solutions to the difficulties we see as we get older,” Ms Scott said.
“We still have our sons and daughters living with us because the supports aren’t in place.”
Kylie, who has Down syndrome, is able to live independently but can’t afford to pay Sydney’s high rents, and would be forced to live somewhere far from her existing support networks, and with limited access to public transport, Ms Scott said.
“It’s something that I really would like to see Kylie able to establish in her own right while I’m still around to assist.
“I’ve come up against brick walls everywhere. It’s been a very frustrating year.”
This article first appeared on ‘Sydney Morning Herald’ on 12 October 2014.